Bone Mets Thread
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cyathea, Just wishing you good lucK, I had rads to L1 last year and it was pretty uneventful in terms of side effects , wish you the same.
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cyathea- best of luck - will be saying a prayer!! and please let us know how it goes. Depending on next scan I may be in line for rads to L1. Would appreciate your experience.
thanks Olma61 for sharing your experience!0 -
BevJen, thanks for the update on Dr. Brufsky; that's awesome he's so responsive. Good idea to have him in the back pocket for a 2nd opinion.
Cyathea, and that's awesome he's your MO! Nice to hear he's such a good one. Good luck with the radiation that I trust will be uneventful.
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Thanks for all the encouragement!
I just had my simulation done for my spine. The procedure is different than my breast simulation. It's like a whole body hug. There is a whole body bean bag under you and then they put plastic on top and suck the air out of the body bag and the clear plastic. This is to keep me from moving or breathing too deeply when they do the radiation.
My simulation took less than an hour but the tech told me that it can easily take two hours in some cases.
I'm glad I'm not claustrophobic as I imagine this "Foodsaver" treatment could be difficult for some. For me, it felt pretty good, a little like being in a massage chair. The only thing that felt a little annoying was that I have neuropathy in my feet From chemo and it doesn't feel very good to have the tightness there. But my toes are mostly numb so it wasn't too bad.
I’m a little nervous about the rads, but I think I only need to have a couple of treatments so I think it should be fine
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Thanks for the update on the simulation. I’m glad it went well overall. Looking forward to the rest of it going just as well! And hopefully a positive outcome!
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Hi all, I've been away from this site for a while. I always come back when I need some hope. Diagnosed with multiple (and I mean all over) bone mets Feb 2018. Have done well on either Ibrance/letrozole or Ibrance/Faslodex until a month or two ago when pain began to worsen. My last scan in Jan was stable and showed no progression. Will find out next week about my tumor marker levels. Previously, ibuprofen took care of my pain, but now.... not so much. I'm thinking it has to be the cancer progressing. Has anyone had increasing pain attributable to something other than disease progression? The pain I'm experiencing feels like "nerve pain". Comes and goes but worse when I'm trying to sleep. Runs down my arms and legs when it's bad. I was in remission for 20 years before the bone mets were found, so I'm thinking my cancer isn't super aggressive. Any advise or info would be appreciated.
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I'm not sure how I found this subscription or who recommended it, but it is excellent. I'm sorry if it's fuzzy. It seems to originate from "Practice Update":
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Lynn,
I have subscribed to this as well -- both for metastatic breast cancer updates as well as for oncology in general. I think it's great, too. But like you, I'm not sure how I got into it. It's really for providers, but there is a lot of interesting info that I can bring to my doc.
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Agreed! And here's a clear copy of it:
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JoynerL - don't see the clear copy. Is there a link? Very interested. Thank you.
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TnQuilter, I'm sorry about your pain. I am fairly new to the Stage IV bone mets group. I asked my oncologist at my last appointment about pain. When do I contact her about pain? New pain, worsening pain, sharp pain, etc. She told me that if it is worsening or new pain that is increasing or not relieved with OTC meds (I use Tylenol) then I should contact her. So far, my pain has been stable - pretty consistently a "2" on the 1 to 10 scale. I take Tylenol PM before I go to sleep each night. I think it helps.
All the best to you.
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A quick question: How do I add Zometa to my treatment plan? It's not really Hormonal (I don't think). Thanks!
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TnQuilter...I actually have various nerve pain 'spots' throughout my body (I also get the pins and needles especially in my feet). I feel it's nerve issues because it actually moves around the spot when I touch it, so it doesn't seem to be on the bone. I have knee pain right now that I think is either from a nerve/tendon/ligament because I felt a 'pop' right before the pain started (just by lifting my leg up over the tub getting out of the shower). I made a thread about it that only one person responded to so maybe if you add your question there it will get more replies.
https://community.breastcancer.org/forum/8/topics/876723?page=1#idx_2
I go for my injections again in a little over a week, so if they don't set up a video call with my doctor and the pain in my knee isn't better I'll set a call up with the MO. It does feel a little better so I am waiting to see. I am due for my regular scans at the end of July.
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Sunshine99,
You asked about adding zometa to your medicines. I just went through this with my MO. She said she's going to add it. For me, it was that easy.
We discussed both zometa (IV/given every 3 months) and xgeva (injection/every month) and talked both through. She said she prefers zometa, even though it's IV; she said it's about a 15 minute infusion. Xgeva, however, (the newer drug) is given every month right now, although testing is going on to see if it, too, can be extended to every three months. I think that some docs are actually already doing that, but my MO won't do it unless and until that's proved by research.
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Oops, sorry I wasn't clear about adding Zometa to my treatment plan. I'm already getting the infusions (starting 5/25), but I want to add it to my treatments on my profile. I've had 2 infusions so far. The nausea the first night was pretty bad. I'm taking a Claritin the day before, of and after my infusion. I also took a Compazine the night of my 2nd infusion, but still woke up with really bad nausea about 4:00 AM. I'm hoping the next infusion is a little better.
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TnQuilter, hi. I have had both nerve and bone pain, before diagnosed with BC and after that. As you mentioned the pain comes and goes, so definitely it is nerve involved. For nerve pain relief, there are different options such as physical therapy and acupuncture. But it would be much helpful if your doc understands where is the source of pain, for example it is related to bone Mets spine compression. This information will help to get you right treatment. For bone pain, usually radiation therapy is the common treatment.
my onc got me zometa, but it would not help, I experienced pain in all my bones, and tumors growing wouldn’t stop. Now I am on xgeva, my bone pain gets better, but still nerves are involved as tumors pressure on cord and cancer cells spread to cord.Hope that helps
Jul
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This appears to be an excellent site. I clicked on the article entitled, "Sequencing Endocrine Therapy for Metastatic Breast Cancer: What Do We Do After Disease Progression on a CDK4/6 Inhibitor? 2020 Jun 17
and it took me to this page. I like the "Take-Home Message" message especially, as it is a quick summary of the material included. In this case, if you dig further, that's pretty much all the information included in this particular article.
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Initially when I was diagnosed with a bone met the MO recommended calcium and vitamin D daily. For several months I was constipated, I wasn't sure what medicine or supplement was the culprit. Last month I stopped the calcium supplement and no longer have to combat with constipation. I had my lab work this past week and the calcium number was with-in range and didn't change from previous lab work. So my question is do you think it's ok to stop the calcium supplement? I don't see my MO until end of August, felt it wasn't that crucial to email. Would appreciate to hear from folks in a similar situation. thanks
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I just saw my MO yesterday and he told me to start taking The calcium/vitamin D supplement and to call him if I get constipated. The pharmacist also said to call her if I get constipated. So I guess that is a common side effect. I can’t comment on whether you should continue or not. My MO said it’s insurance to help keep my bones strong. I’m also on Zometa.
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RK2020: I was taking the calcium consistently for 7 months. Even with laxatives and magnesium it was just awful with constipation. I’m now trying to eat foods with high calcium. If this doesn’t work out I may switch to calcium citrate rather then the carbonate form of calcium. With working full time it’s quite a balancing act so I had to be careful with laxatives or high fiber supplements. I’m also on Xgeva every 3 months which hopefully is helping with bone strength. My calcium level is 9.2. Hasn’t changed with or without the calcium supplement. So I plan to monitor monthly.
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Tinkerbell,
Just curious: how did you get your MO to dose Xgeva every three months rather than once a month? I'm starting Zometa next month but primarily went with that bc it's every three months. To my understanding, the clinical testing of Xgeva has not yet been completed that says that it's just as effective every three months as every month.
Thanks for any info you can provide.
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BevJen: When the data came out with Zometa every 3 months my MO was confident after speaking to her inner circle of contacts that Xgeva would follow suit and wasn’t going to wait until the research confirmed the same. Basically my MO felt there was more harm then good keeping me on Xgeva monthly due to potential negative side effects. I was in agreement with the same. From my understanding this is not unusual prescribing Xgeva every 3 months after listening to a recent conference on bone mets. Plus I didn’t want to go for an infusion of zometa at the hospital every 3 months.
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BevJen, I've had two infusions of Zometa so far. I'm getting them every month. I had pretty bad nausea the night/early morning after the infusion. I've been taking a Claritin tab the day before, of and after the infusion. The first time, I took a Compazine at about 4:00 AM the day after the infusion. It seemed to help a bit. The second time, I took the Compazine before I went to bed, but I still woke up early morning quite nauseated. I never vomited, but I just felt yucky. I also ran a temp of about 101 for a day or so after the infusion, but I never felt achy. I have mets to my hip, spine and femur, but not to any organs.
Good luck with your infusions.
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Tinkerbell...did they mention what the possible negative side effects they were referring to? I ask because I am on Xgeva monthly. Thanks.
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In my situation the concern was the anemia and how Xgeva can play a role in low RBC. Since I’m on ibrance this was a concern plus the notorious side effects such as ONJ.
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Thanks Tinkerbell!
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Xgeva discussion- I have been on Xgeva the whole time--since Nov 2017. I was not given a choice of Xgeva or Zometa-- not that I would have understood back then. I was given Xgeva monthly for the first year, then my MO changed to every 3 months. She said that is the way it is given and she also mentioned the rare, but serious side effect of ONJ. I agreed, since ONJ sounds horrid. Also, she said if I did develop ONJ I would have to come off the drug and never go back on. So, with that, I felt every 3 months was good. I just learned in the LBBC Conference-- almost 3 years into my diagnosis-- that the every 3 month Xgeva dosing is still in trial. So I hope I am getting the full benefit of the Xgeva on my bones.
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Candy, I've been on Xgeva since the beginning, too, since February 2017. I believe that I started monthly and that after a year or so my doctor changed me to every 3 months. Then, in November of 2018, I developed hypercalcemia, and he put me back on monthly. I have remained on monthly since then.
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Joyner- We do labs monthly and my calcium level has stayed normal. So, I guess, we stay on the 3 month protocol unless something crops up.
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I take Citrical SR 1200....it is slow release, so just one a day, and it is the citrate form, so easier on the digestive system. Also contains vitamin D3, but I take additional 5000 units D3 anyway
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